@blistle - Someone posted in the past that Dr. Hepworth will move the IJV away from C-1 & tack it to a local muscle (if I recall correctly) so no shaving of C-1 is necessary. Dr. Lawton has a video on YouTube where he carves a channel in the transverse process of C-1 to make more room for the IJV rather than shaving C-1, but as Jules said, he seems to be ultra picky about which cases he’ll take. I’m so glad @KoolDude knew that info about Dr. Nakaji. I believe he’s on our doctor’s list but we’ll need to add the info abt his experience working w/ C-1.
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He was also listed in this post as taking care of Styloid/C1 by @JustBreathe
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thanks. I didn’t end up calling yesterday; I think I’m going to wait until I hear back from Dr. Cognetti about my scan. Hoping that having a credible diagnosis will make getting seen by a specialist easier.
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Good plan, @blistle! I hope Dr. Cognetti gets back to you ASAP.
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Update: I hit another snag as of Tuesday. It looks like the scan arrived in PA but failed to deliver. I’ve heard Dr. Cognetti only looks at ES stuff on Wednesdays so I’ll be waiting another week unless other docs respond faster. I’m also waiting to schedule consults with Dr. Osborne and/or Dr. Patsalides in case I can’t work things out w/ Dr. C.
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So many obstacles for you 
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I’m sorry for this additional setback. More frustration, but on a positive note, perhaps it’s setting up better timing for you & an opportunity to find the right doctor for your situation. 
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Another update: Just had a virtual consult with Dr. Osborne. He said he couldn’t offer an opinion without proper neuroimaging and recommended I visit the Hauser Neck Center at Caring Medical Florida (which is around 1400 miles away from me).
I would recommend you stay away from Dr. Hauser & Caring Medical. We have a number of members who went the prolotherapy route prior to ES diagnosis. Dr. Hauser actually diagnosed them w/ ES, but the majority have said they spent several thousand dollars on prolotherapy treatment without any positive results. It’s seems good in theory but not so much in practice. Besides that, it wouldn’t help your vascular compression symptoms at all.
My personal feeling is that Dr. Osborne doesn’t know much about ES even though he posted the YouTube video about the ES surgery he did . You will be much better off seeing Dr. Hackman or Dr. Hepworth if possible.
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That’s good to know, thank you! His website & video on ES did seem like a red flag to me tbh, but I was desperate and figured a consult couldn’t hurt. Oh well.
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Another update: the scan I sent to Philly came back. Apparently they need a proper CD & can’t use the USB I mailed them. (I was told a USB copy would be ok but oh well haha.)
I saw a local ENT today who, to my surprise, has heard of ES. He has even seen a few patients with it. He went the extra mile & looked at my CT scan in detail. It’s his opinion that I most likely have some kind of trigeminal neuralgia or atery-nerve pain thing going on, but he also said that he couldn’t rule out ES. Apparently my right styloid is more deviant than the left, but it’s hard to tell to what degree they are calcified. He said that because I have pain on both sides it points towards ES not being the culprit. He also couldn’t see see any vein impingement from the scan alone. He also did a test where he pressed on the inside of my mouth where the styloids are which was very painful.
So I guess now I go see a neurologist and this throat doctor he recommended while I continue to try to get ES specialists to take a look at my scans.
Edit: artery*
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I think you will have to be blind not to see that C1 is severely compressing your right Jugular Vein. I am pretty sure you have IIH caused by C1 compression of your right dominant Jugular Vein. But then, he only looked at Styloid compression which, in your case, is not significant on your right and does not compress on your left IJV. I think you need vascular surgeon along with ENT Surgeon to properly diagnose you. Don’t expect these folks to know. We all know too well as we all have been dismissed many times before getting the proper diagnoses. My 2 cents.
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@blistle - Your symptoms clearly point to ES. One key test is pain when the styloid area in the throat is touched/pressed. Trigeminal neuralgia is a VERY COMMON symptom of ES as is glossopharyngeal neuralgia. Both of these typically “retire” once the styloids are removed & stop irritating these nerves. I feel strongly that even though the local doc you saw knew of ES, he didn’t know much about symptoms & other details.
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I did mention the vein compression & he said he didn’t see anything. But I could ask him to take another look-- he seems like he is actually taking this seriously. I’ll try to get a vascular surgeon’s perspective too.
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Have you shown him the axial and sagittal images posted here? I know he is not radiologist but at least he should be able to see the compression. I would print those images and show him.
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I definitely have trigeminal nerve irritation but I am unsure how the styloids can affect it. From what I can tell, the bulb is higher up than where the styloid grows. Is there a way you can demonstrate how the styloids can affect the TN?
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I could print some info out for the follow-up, that’s a good idea. What do you mean by the bulb?
I have not. That’s a good idea.
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So my current priority is getting some kind of temporary relief so I can focus on school & return to work. I’ve heard that people go on blood thinners and/or nerve pain meds while waiting for surgery. It seems like nobody is willing to treat me with anything without having a definitive diagnosis, so I’m pursuing a diagnosis. Does this make sense? Is there more I could be doing to get treatment sooner? I feel like I must be doing something wrong here because my approach does not seem to be working.
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@blistle - I’m sure you aren’t doing anything wrong. ES, & especially VES, are poorly understood & minimally acknowledged by the majority of the medical world. It may take time for you to find the right doctor who acknowledges what you have going on & is willing to provide what you need as far as meds go to help ease your symptoms. Dr. Hackman would likely be helpful, but I recall you’re not planning to see him because of the other referrals you’ve gotten. I know doctors cannot Rx meds to patients they haven’t seen in person whether local or out of state so even a video consult won’t be helpful on the meds front.
I hope your next set of scan images is accepted by Dr. Cognetti as his opinion abt your diagnosis will be a helpful step forward for you.
Here’s a drawing of the course of the trigeminal nerve. You can see the “bulb” near where the jaw joint would be.
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